You have to flex with fibro

 All of us who suffer with fibromyalgia know that it's a very unpredictable illness. We just can't plan with it as we don't know how we will feel until we wake up- and even then it's unpredictable.

We can start our day with extreme stiffness and pain, yet can come better by mid morning some days. It makes planning our day difficult to say the least.

I can't count the number of times I have had to apologise to someone for not being able to socialise or go shopping. I felt well at the time of arranging or accepting the invite, but fibro had other plans and held my body hostage.

Countless times I have planned to declutter my house or some other chore, and I have even gotten started only to find that my body was yelling at me, "Seriously??" and I had to stop. 

It is very challenging and even depressing. But it is what it is. Fibromyalgia is a pain in so many ways!

Lately, I have learned to say to people that I would love to come/do something but because of my fibromyalgia, I won't really know until the day how I will feel. So I will say a tentative yes and hope to be there/see you! 

I have had to learn to not be dogmatic about when I will do a certain chore. For example, all my life as a homemaker, I have changed my sheets every Monday. But with the coming of chronic illness, I might not feel well enough to do it that day. I have just had to accept it.

Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.

I have learned the hard way too that it's no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It's not the end of the world, and you just have to flex with fibro...

Painted in to a corner

So we visited our doctor last week and he asked us if we wanted the Covid 19 vaccine. With both of us with weak hearts, diabetic and obese, plus being older he told us we should consider it.

Well, we have considered it. With ordinary flu vaccines, both of us had a really bad reaction to it, and we both swore we wouldn't have another one. So we declined.

We pointed this out to him, plus the added problem with my blood being sticky and my propensity to make clots, it seems too risky. Even with Clopidogrel and aspirin blood thinners which I am on for life.

The doctor said if I wanted it that he would consult with my specialist who deals with my antiphospholipid syndrome. When I told him I didn't have one, he said that he would have to refer me to one and take it from there.

I asked if he was planning to have the vaccine and he said he and all in his clinic had already had it. I asked him which one. He replied AstraZeneca. 

Now AstraZeneca has been ceased in some European countries because it seems to be linked to many cases of blood clots.

As an older person, I would be given AstraZeneca here in Australia to leave the other vaccines for those under 50 who may be at greater risk of blood clots. 

With severe muscle pain already from fibromyalgia, I can do without feeling even worse. Especially for a disease that has a 98% survival rate if you are unlucky enough to catch it in the first place.

So we declined and the doctor was OK with that. For the moment. Because I can foresee in the near future that there will be more pressure on people to be vaccinated, especially as more vaccines become available.

I will never agree to being vaccinated and it's OK now, but with a muted message on Twitter from our Prime Minister that "certain things will have to be done to ensure all are vaccinated" and revealing that even Australian citizens may not be able to return to Australia if unvaccinated, the die is cast for some coersion in complying.

We will be standing our ground on this experimental vaccine, but we feel that it's only a matter of time before we are ordered to comply and are painted in to a corner.

The only positive thing for spoonies

I was talking to my daughter this morning. She also has fibromyalgia. She asked me what plans I had for today and I told her I was planning to take a shower.

We laughed at how ridiculous that sounded and then we realised that once again, it's all about spoons and being organised.

Given the nature of fibromyalgia, one can never plan anything until we wake up each day, and then it is entirely dependent on pain and energy issues. 

We can never be spontaneous, but have to weigh up the need or desire to do something against the reality- having enough spoons to see us through the day.

If one thinks there just may be enough spoons to go somewhere or do something, we then go in to planning mode. We may cook dinner in the slow cooker instead of preparing something at the end of the day.

Perhaps we will go to a doctors' appointment and must organise our day with the idea that dinner is taken care of via the slow cooker and the bed will be inviting and will be calling us as soon as we get home.

We become experts at planning our lives as we go, and despite fibro brain fog, we usually can think on our feet as to what would be possible on any given day. Today I am making a slow cooker stew for dinner and saving my spoons for that shower. 

I really hate being ill, and I can't think of any positives about fibromyalgia and other trials we spoonie friends have to endure. But the one (the only) thing I can think of for us is that chronic illness has made us masters of organisation and planning. 

I am very grateful!

I am feeling excited today because I actually feel human. I even have a few spoons! This is so unusual that I feel like throwing a party! 

The Prednisolone has helped me get over my polymyalgia rheumatica and fibromyalgia flares and I am weaning off them. My blood pressure is coming down too.

It probably is because Chris had a good report from the doctor on Wednesday. Fluid in his lungs, on his legs and feet is gone. Bloods are better as are his sugars. Just high BP but not overly worrying.. He's sleeping in bed again... so. very. grateful! 

Those of us who are chronically ill know that stress exacerbates our illness and it certainly was the case the past fortnight. 

I am keeping up with the dishes as I mentioned a few days ago and I am pleased to report to you that they are still under control.

Today I have done a load of washing and I am presently washing and bleaching all my towels as I have been chucking them in the washer without sorting the wash and they are a horrible grey colour.

With the dryer my spoons will not be taxed too much. I am doing roast chicken, roast potatoes, and vegetables for dinner.

An old hand at pacing myself so as not to burn out for tomorrow, I will be resisting the urge to do more than I should.

In the recesses of my mind, I can vaguely remember that feeling of joie de vie that comes with youth and health. It's almost how I feel today. I am very grateful.

I can't keep doing this to myself!

When I have a bad flare of fibromyalgia and/or polymyalgia rheumatica, I feel so sore and tired that I often let the dishes build up.

We all know that when you put one cup or bowl in the sink, they suddenly start multiplying and pretty soon you have a stack to tackle in washing up.

With Chris quite ill at the moment, I am loathe to ask him to help me so this problem is absolutely on my shoulders alone.

Last week the lady who comes to clean our house once a fortnight, washed and put away my dishes and it was so nice to see an empty sink and find a clean cup without a search party and ensuing  mammoth cleaning marathon.

I was so impressed that I have kept it up, washing up as we use the crockery. In fact, the first day after she helped me, we got up and thought we were in the wrong house! There was a clean sink and kitchen.

It's taken me 52 years of being a home maker to finally realise that by procrastination- I mean of the long duration type, not once in a blue moon- is a killer not only of productivity but peace.

It's been a week now since I have turned over a new leaf and I have found that it is less draining on my energy levels and is achievable.

I know it's only been a week, but for a chronically ill old chook with longstanding procrastination habits, it's a long time.

It probably sounds pathetic to all the "normals" who say, "Well it's only washing the dishes!", but to a spoon challenged tired sick sufferer of continual pain, it's a big deal!

Another plus is that with the kitchen clean, my spirits have been uplifted and I am far more likely to grab the pile of clean washing and fold it. It sort of has a domino effect! 

Whatever, I feel better for the discipline and look forward to waking up to a clean kitchen now. Besides, with the realisation that housework is spiritual, I find I function best in a tidy house and will make every effort to keep it up and not have a mammoth dishwashing session. I can't keep doing this to myself! 

 

Hand over the Prednisolone!

I was too afraid to take the 5mg Prednisolone x 3 tablets the doctor gave me Monday for my polymyalgia rheumatica flareup and arthritic deformed hands...

He said to take it for a week and see how it goes, but I was so scared of the side effects that I wondered if I should avoid it. I know it will raise by blood sugars and I am diabetic. Also, I know it will raise my blood pressure. But still, the pain is rising so much that I really don't know what to do...

I have temple pain with the PMR and I am scared it may go into giant cell arteritis. I had them in my hand that morning, chickened out and put them back in the bottle....

I had a phone consult with my doctor later today and I discussed what was worrying me about taking Prednisolone. We discussed the risks and he asked me to try it till Monday when we both go to see him. My ESR was very high (50) so he is pretty sure it's PMR back again. So this morning I took them.

It's evening now and I am exhausted but feel a bit edgy so I am not in bed yet. I know this will sound untrue, but this arvo I have been able to move my thumb and bend my fingers for the first time in months! I hope it continues...

Twelve hours in, in the midst of this battle with pain, it seems like a miracle cure! I am a new fan. I am glad now that I weighed up the pros and cons as I weighed my burgeoning body.

Unable to hold a cake knife, I shouted to my husband, "Hand over the Prednisolone and no one gets hurt!” as I reached for another piece of comforting cake.

Just keeping my head above water

 

I have copped a double whammy with both a flare of my fibromyalgia and polymyalgia rheumatica.  The pain and fatigue are overwhelming.

No doubt this was caused by Chris's diagnosis of heart failure, my daughter's impending leukaemia specialist test results, my grandson going to prison and the pain this has caused to us as a family.

I am feeling extremely unwell and was hesitant to take the Prednisolone my doctor ordered, but after a phone consult with him today, we discussed the risks v advantages and decided the risk was worth it.

Although I am feeling exhausted, the Prednisolone has given me a high that precludes going to bed for a nana nap. I have just sat up in the loungeroom watching and feeding the birds.

I have a sink full of dishes to do but no energy to do them. The only reason I am blogging now is that I am sitting and it takes very little of my limited spoons.

Recently, adapting to our new normal, our dryer was placed on top of our front loader washer and this has helped me so much with not having to stoop too much with my sore back and hips.

If I was well, I would have hung the washing out to dry as the last few days have been lovely warm autumn days here in Australia. But I have to use the dryer as I can no longer peg the clothes out or stretch my arms above my head.

When I finish talking with you, I am going back to my couch aka "the beach".  I will be doing steak, chips, eggs tomatoes and baked beans for dinner. 

Spiritually I am doing fine, it's just the physical that pulls me down- and I am exhausted just keeping my head above water!

It never rains, but pours!

 

So now not only is my blood pressure high and my fibromyalgia flaring, but I have a flare up of my polymyalgia rheumatica.

I believe it's probably brought on by stress, and with Chris being so ill and newly diagnosed with heart failure, it's been like I predicted: a bumpy ride.

I have been given Prednisolone to take, but it elevates blood sugars, makes for brittle bones and teeth and creates  cataracts. I am not sure what to do...

Today I had intended to catch up on my dishes, but all I have managed is a couple of loads of washing. Between fibromyalgia and PMR, all I want to do is sleep.

It is 6.30pm here and I have made dinner and cleared up from it. I will be having an early night and hoping to wake up with some spoons. We are having company tomorrow so I will have to get up early.

I may take those Prednisolone tablets tomorrow. They may give me some energy as well, which would be great. Hopefully things will settle down soon. I am feeling overwhelmed. 

It seems at this chapter of my life that trouble never rains, but pours!

It is what it is!

Many of you will know that my husband, Chris is facing serious health issues. He has recently been diagnosed with heart failure.

With fluid on his lungs, he feels like he is suffocating when he lies down, and so he sleeps sitting up in the recliner.

The fluid tablets don't seem to be moving much fluid off his badly swollen legs and feet either. His feet are so swollen that no shoes will fit him.

I was able to buy him some orthopaedic slippers that come apart and are fastened around the feet, ensuring a comfortable fit. They are quite warm as well which is a bonus in our autumn chilly mornings here.

We have many cardiologist and doctor appointments and tests in the coming weeks and  it really effects my fibromyalgia badly. But we keep on keeping on because we don't have any choice.

After a day out for medical appointments, I am usually running on no spoons and that is when Chris looks after me.

He makes me a cup of tea and turns my electric blanket on. He encourages me to rest and chooses an easy slow cooker meal for dinner. I usually cook that on the day whilst we are out.

I allow Chris full reign of what he wants to eat as his appetite is not as good as before he got sick. So you will find us discussing menus the day before.

I do all organising for his appointments, ensure his medications are made up, sort them out for the week and drive him to said appointments if he doesn't feel up to it.

He in return guards my health and makes sure I get uninterrupted sleep as I don't sleep soundly due to fibromyalgia pain.

In line with this, we now share separate bedrooms. Our marriage is as strong and loving as ever, but due to illness we both have found we sleep better apart.

It wasn't what we really wanted, but it is just part of our own new normal. We still sit together watching TV and we hold hands all the time. But with health issues causing insomnia, it is the only way we both can help each other. It is what it is.

When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Proverbs 3:24a

Our home is so nurturing

Yesterday we went to the doctor who doubled Chris's fluid tablets as he has fluid in his lungs. He doubled one of my blood pressure tablets taking the total to 8 different types a day. 

I have fibro fog really bad and forgot to bring the repeat prescriptions we needed to get made up, so we came home and now have to go again today. 

On the bright side, we have been staying home most days and we both are feeling really content with the house we are renting. We both feel the LORD picked it just for us- it is perfect and nurtures us both. 

A lot of time is spent lying or sitting on the couch aka "the beach",  and the big window leading to the back garden is beautifully showing the birdlife. It is like a screen saver- it is never still and always changing with a bird or butterfly passing by. So exceptionally soothing for us both at this season of our life.

1. Today I must do a load of washing
2. Go to the chemist
3. Cook a stew for dinner tonight.

And my people shall dwell in a peaceable habitation, and in sure dwellings, and in quiet resting places; Isaiah 32:18